February is always an important month for Neuroendocrine Cancer UK. It is the month of World Cancer Day and Rare Disease Day which gives us the perfect opportunity to talk about the unmet needs of this misunderstood cancer.
World Cancer Day is a poignant reminder of the collective efforts needed to combat cancer worldwide. For organisations like Neuroendocrine Cancer UK, this day holds profound significance, serving as a
platform to raise awareness, advocate for change, and foster solidarity within the neuroendocrine cancer community. In this blog, we delve into why Neuroendocrine Cancer UK celebrates World Cancer Day and the impact of this global movement on individuals affected by this rare form of cancer.
Raising Awareness Neuroendocrine cancer, though often considered rare, affects thousands of individuals worldwide. Yet, awareness about this disease remains limited among the general public. World Cancer Day offers an invaluable opportunity to shine a spotlight on neuroendocrine cancer, educating people about its symptoms, diagnosis, and treatment options. By participating in this global initiative, Neuroendocrine Cancer UK strives to increase awareness and ensure that those affected receive the support and understanding they deserve.
Advocating for Change Beyond raising awareness, World Cancer Day is a catalyst for advocacy and action. Neuroendocrine Cancer UK uses this platform to advocate for improved healthcare policies, increased research funding, and better access to treatment for neuroendocrine cancer patients. By amplifying the voices of those affected and collaborating with policymakers and healthcare professionals, we work towards addressing the unique challenges faced by individuals with neuroendocrine cancer and advocating for meaningful change.
World Cancer Day embarked on a three-year initiative that began in 2022. It was aimed at sparking transformation and rallying ongoing efforts well beyond the event itself. The theme last year was “Closing the Care Gap”. The campaign was all about understanding and recognising the inequities in cancer care.
This is something Neuroendocrine Cancer community knows all too well about. Despite being the 10th most prevalent cancer in England*, national cancer plans do not currently represent the neuroendocrine cancer community*. Therefore, the development of a patient care pathway for neuroendocrine cancer is critical in supporting optimal care provision for all those diagnosed within existing expert multidisciplinary teams.
In 2023, Neuroendocrine Cancer UK launched a major campaign to implement a dedicated Neuroendocrine Cancer Pathway into NHS England. The pathway aims to address the persistent challenges and inequities in diagnosis and disease management that have been affecting patients with neuroendocrine cancers, also known as neuroendocrine neoplasms (NENs), in England.
*Impact of neuroendocrine morphology on cancer outcomes and stage at diagnosis: a UK nationwide cohort study 2013–2015
World Cancer Day 2025-27’s theme is “United by Unique,” and puts people at the heart of cancer care. Cancer is deeply personal, with each diagnosis representing a unique story of grief, pain, healing, and resilience. Person-centred care, addressing individual needs with compassion, delivers the best results. We must unite to create a world where health systems prioritise people and communities, seeing the person, not just the disease.
Neuroendocrine Cancer UK recognises how personal a diagnosis of cancer is and actively shares patient stories to provide support, raise awareness, and foster a sense of community among those affected by neuroendocrine cancers. These stories recount personal journeys, including diagnosis, treatment, and living with the condition. They also create a regular podcast series and invited patients and their families, as well as Healthcare professionals to speak in an open forum about living with neuroendocrine cancer.
As mentioned previously, the Neuroendocrine Cancer Ideal Patient Care Pathway, provides evidence-based recommendations to improve care for individuals with neuroendocrine cancers. This pathway focuses on faster diagnosis, access to specialist care, and overcoming barriers identified in research.
The Virtual Patient Handbook, serves as a practical toolkit for those living with neuroendocrine cancer. This resource provides comprehensive information to guide patients through their journey, ensuring they have access to the knowledge needed to make informed decisions about their care.
Neuroendocrine Cancer UK offers a variety of Support groups designed to meet the diverse and unique needs of the neuroendocrine cancer community. These groups are are informal, community-based meetings
where patients and carers can discuss any issues they may have. These meetings offer an opportunity to meet others affected by neuroendocrine cancer and share experiences.
Additionally, Neuroendocrine Cancer UK provides online support groups through Facebook, offering a safe and supportive space for patients, loved ones, and caregivers in the UK who are affected by neuroendocrine cancer.
These support groups aim to provide social and emotional support, allowing individuals to connect with others facing similar challenges.
Neuroendocrine Cancer UK will be actively supporting World Cancer Day and will always treat their patients as unique individuals and not just a diagnosis.
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Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.
